My awesome and brave son, my hemi-hero! (Part #2)

Ah, Happy New Year! Hope 2016 brings us all more health, love, and success!

Lucas had some setbacks with his epilepsy in 2015, mainly a definitive diagnosis of ESES (Electrical Status Epilepticus during Sleep) that has really switched things up for us, but that is a whole other post for my readers to look forward to.

So to continue to Part #2 of Lucas’ story and why he’s my Hemi-Hero, without further ado…

Where was I? Oh, yes, back at the fact that I knew that something was not right with my baby boy.

He was born screaming, almost as if he was in dire pain. Being a veteran mom, I knew his screams were not typical of a newborn, especially because he wouldn’t stop crying. My first two kids did not cry when they were born, they kind of just came out and looked at me and said, “Hey mom, I’m the stranger that has been living inside your body these past 9 months, nice to meet you!”

Lucas was 8 pounds and 7 ounces and his APGAR scores were 9’s, he was a week shy of the 40 week mark, so basically full-term and the OB and the nurse on-call didn’t suspect anything was wrong. I noticed his nail beds and lips would not “pink up” in the usual time a newborn would and he rotated between blood curdling screams and almost falling asleep, but it seems like he was passing out. In my mother’s heart, I knew this baby was suffering. We spent about 2 hours in the labor & delivery room recovering and then they moved us to a suite. He still seemed to struggle, so I asked the nurse to take him to the nursery to be checked out further by the neonatologist.

My hubby and I passed out a while after and were awoken at 4 a.m. by the nurse and told that we shouldn’t panic, but our boy was in the NICU and had been placed on CPAP. While on the machine, he also stopped breathing twice and that was who the “Code Blue” was for. We rushed to the NICU and that was the first time I saw him in the incubator hooked up to all sorts of machines, needles, and wires.

That first day of his life, he only kept deteriorating and they didn’t know why, but suspected a few things. Tests were performed, labs were drawn, and we had to await the results. Later in the day, we were told that he was the sickest of all the babies in the NICU and they were doing their best for him. By now he was on a ventilator and with each passing hour they had to keep turning up the oxygen levels, little did I know that was really bad news. I thank God that I was naïve to what was really going on at the time because my anxiety and freak-out mode would have increased 100 fold!

At just about 24 hours old, the doctor took us into a separate room to discuss what was going on. It’s the room where they give you the really bad news and I felt like we were on an episode of “ER” or “Grey’s Anatomy”, it was surreal. They told us that Lucas had Persistent Pulmonary Hypertension of the Newborn (PPHN), Patent Ductus Arteriosus (PDA), and a Patent Foramen Ovale (PFO). The PDA and PFO were considered “congenital defects”, which is a fancy way to say he was born with these issues. He was currently on his way to 90% oxygen and was too critical to move to the children’s hospital NICU where he may need to get onto an ECMO machine. They wanted to give him pulmonary Surfactant which was usually used in preemies to help them breathe and was not usually effective in full-term babies. Lucas had a 50/50 shot of this medicine working, if it didn’t I don’t think he would have been here with us today. Within 30 minutes of the drug coating his lungs, it began working. We prayed to God and our angels in heaven to help our boy and his oxygen level was able to be reduced to 30% within 30 minutes of administering the treatment. At 100% oxygen, babies can have serious brain damage and are at high risk for going blind and deaf, thankfully I was only told that by a nurse after the fact. My hubby and I were able to breathe a momentary sigh of relief because this medicine was working and we had some hope that Lucas would pull-through.

He remained on the ventilator for 4 more days, each day his oxygen was being reduced, his blood gases were coming into range, jaundice was treated, respiratory rate and blood pressure were stabilizing, and his echocardiograms showed that the PDA was finally closing on its own without the need for surgery. He spent 8 days in the NICU that felt like a sad and scary eternity, but I know that other parents have spent way longer holding vigil for their children in the NICU and it’s an experience we all want to forget and just bring our babies home.

Upon discharge, they said everything had resolved and they expected there would be no long term damage, little they did or we know that these doctors would be so wrong.